Liv's Story - Part 3 of 3

Although we were heartbroken by the fact that Texas Children’s Hospital could not do the surgeries and save Liv, we were at the same time relieved by the fact that Liv would not have to go through the open heart surgeries and months / years of life in the hospital and struggles. One of the blessings that came out of all of our research and struggle in choosing to do surgeries or not, is that we understand (as much as possible as people who have not actually gone through the struggles) what the surgeries would mean for Liv’s life. If she were to survive, her road would have been extremely difficult & painful (for Liv, us as her parents, and the many life changes for the twins). While we were fully committed to helping Liv through that road, no matter what came, we were also dreading having to put her through all of the surgeries and medical procedures only for her not to be able to survive any length of time outside of the hospital.

The trip back home to Zachary on Sunday morning was definitely one of mixed emotions. We were joyful to be able to bring Liv back home. We never thought that we would be able to do that if she were to pass away. We thought that she would almost certainly be in the hospital if that time came. We were also sad because of what the trip meant, and what we knew was to come. We were transported home by the Kangaroo Crew, who once again were the most loving and comforting people we could have asked for. When we arrived home, it was a little bit unreal to actually be there, as we had already come to terms just the week before that we wouldn’t be coming back for many months. The house was so still and peaceful and tidy (the twins had not made it home yet). After the Kangaroo Crew left, there was the 10 minutes of “what do we do now”?

(Loading Liv into the airplane for the ride home)

We had a nurse and social worker visit us from the Hospice of Baton Rouge and they helped to explain what would happen and make sure we were set up with everything we needed for Liv. Callie, our very kind and compassionate photographer who had taken our family / maternity pictures come to our house to take pictures of Liv and the boys that we will cherish forever – photos of her with no wires and no tubes. Her husband also came and made a wonderful video of Liv that is truly priceless.

The first night with Liv at home was amazing. It was such a simple time, really: our family of 5 all at home together, safe and warm in our beds. Something we would have certainly taken for granted outside of the circumstances we were currently facing with Liv. It was wonderful for us to be able to hold her without all the beeping and interruptions of the CVICU, without wires keeping her tethered within a foot or so of her CIVCU crib. We didn’t put her down at all except for a couple hours at night to get some rest, where she slept right between us.

One of the great things about being home was getting to see our church group, and them being able to see Liv; we will always be thankful for the time together on Monday afternoon. While we definitely wanted to have this time, we struggled for a long time before deciding that this was the right thing to do. With Liv not on her medications any longer, we were not sure exactly how long she was to have left with us. The doctors had told us anywhere from a couple hours to a couple days. Fortunately, Liv was doing well enough that afternoon for us to have our church group come over to meet her in person!

(Our church group visiting Liv)

 

Our church group has been so instrumental in helping us though this tough season of life. They have been there to pray with us, watch our house and children, and support us in ways that we never knew we needed. They left us notes of scripture and encouragement all over our home, stickers and a balloon for the boys, and made sure we had more than enough food to eat. Whitney watched the boys whenever we needed so we could give undivided attention to Liv and have them around Liv without things being too chaotic.

We were also able to have a quick, private baby dedication with our pastor that afternoon. Baby dedications are very unique and special events. This was an awesome time for us to pray over Liv and her story and for Beth and I to dedicate her life to our Lord, Jesus Christ. God has used Liv to greatly bless our family and others, and we will continue to share Liv’s story throughout our lives and allow God to use her to touch people’s lives and change them for His glory.

That night after our church group went home, we ate dinner, and Asher and Eli came home and were able to see Liv one last time and give her a kiss goodnight. For the next hour or so, we just held each other while holding Liv, all sitting on one cushion of the couch, as Liv’s physical life faded. We always imagined that the moment of Liv’s passing away would be extremely difficult, but the peace that we had in that moment showed us God’s hand and His compassion for our family. As Liv left us, it become more and more evident that she was no longer in her physical body. We had already had our good times with Liv over the previous 9 days: her opening her deep eyes, her sweet newborn movements, how she would nestle up comfortably and make a little double chin in the process, the time spent finger painting with Asher and Eli in the CVICU, her newborn pictures, all the visits from her loving family and friends. We felt no need to hold on to her physical life, knowing that she is leaving for a place in heaven, where she’ll have no pain or fear. All the days in the world would not have felt like enough with Liv. We are proud of the life that Liv lived, and honored that God chose to use her in such a powerful way in our lives and in the lives of people that we’ve never met.

(All the kids' handprints)

Our physical separation from Liv is difficult, and we’ll never cease to long to hold her and to see her again. Our grief is amplified when we see Asher and Eli saddened over missing Liv (which they have begun to express in the recent weeks – especially Asher). Our joy is in the fact that Liv’s life was and continues to be a beautiful display of God’s love for us and how He works through events in our lives to teach us things that we could never have asked for. We love Liv with all of our hearts and have been blessed by God through her life.